A New Label?

Half term, and my son is (quite literally) bouncing off the walls. To us, it’s a living room, but to B it is a Total Wipeout course. The coffee table is a balancing beam, the armchair a trampoline. I don’t think I’ve actually seen him stop moving today. The soundtrack to our day is a symphony of screams, stimming and shouting. I add to the cacophony myself, with cries of, “Get down!”, “Be careful!”, “Not with that in your mouth!”, “Mind that glass!” and “Hey, that was my eye!”

He’s standing on his head. Now a leap from the top of the sofa, followed by a sort of semi back flip. He has no sense of danger and is a hazard unto himself. I doubt there has been a day in the last two years when he has not fallen off his chair at some point. The boy cannot sit still, preferring to balance and rock precariously on two legs of the chair. Just now he head butted the door as he tumbled off the arm of the sofa. Another day, another egg shaped lump on his head.

Near to our house is a large common- a sprawling expanse of fields, paths and woods. It’s a favourite place of ours to take the kids when the weather permits. For many people it is a popular dog walking spot. They open up the car doors and out shoot their excitable Labradors who dash off for a good run round, a bit of exploring and a roll in the dirt. In our case, we open up the doors and out shoot our excitable boys, who dash off for a good run round, a bit of exploring and a roll in the dirt. There’s no difference. B has even been known to do a poo in the middle of the park. We always clean it up though. He hasn’t yet run into the middle of the pool chasing a ball, and he’s not much of a digger. He does like climbing trees though. At least dogs stay pretty much on the ground.

The great thing about the common is that the kids can be as loud as they wish, run, jump and tear around to their heart’s content and generally have a rare old time. There are no hazardous playgrounds, with swings that, without exception, B will wander in front of. He cannot fall backwards off a climbing frame and break his collar bone (he did this when he was two. It took the doctors six weeks to realise what had happened, thanks to his abnormally high pain threshold). We do not have to try to contain our son at the common, he has the freedom to do as he pleases, and it’s lovely.

Regrettably, most of the time B does have to be contained, either at home or in school. This week B’s teacher and T.A. have continued to find this a struggle. Recent comments in his home/school book include, “B is getting a little frustrated”, “he is not responding well at the moment” and “the heat is negatively affecting his attitude/concentration/behaviour, and he is being particularly strong willed at present.” A loaded comment if ever I heard one! I think the word ‘attitude’ is unfair, implying as it does that B chooses to be agitated, unsettled and out of sorts. He doesn’t choose to behave this way; no one chooses to feel agitated and unsettled, or too hot or uncomfortable. He does not have a negative attitude. But clearly he is becoming a handful.

At times like these, we start to wonder whether, at some point, B will be labelled as having Attention Deficit Hyperactivity Disorder, or ADHD. His paediatrician hinted at this during his last consultation. As B spun around the room, giving a nanoseconds attention to everything in his path, she said, “Shall we slap a label of ADHD on you too?” It also cropped up in conversation this week when B’s occupational therapist visited him at home, to watch him eat his evening meal. Despite being weighed down with weighted blankets, wrapped in cushions and his feet pressed into a beanbag, B did not feel grounded enough to sit still. He squirmed his way through half a plate of food before giving up entirely to go and use the living room as a training circuit for the 2024 Olympics.

A little research revealed just how common it is for the labels of autism and ADHD to go hand in hand. Apparently it’s called Comorbidity. What a horrible word. The National Autistic Society says, “An increasing number of children are being diagnosed as having both ADHD or ADD (Attention Deficit Disorder) and ASD.” It also notes that, “There are many reasons for the two conditions being confused in young children” before going on to point out that as the child becomes older, the apparent similarities (inattention, impulsivity, hyperactivity) will separate out.

I don’t know if B has ADHD and I don’t know if, given time, he will calm down. Our concern is that, come Year One at school, the demands of the curriculum will make it much more difficult for him to cope. When our eldest son moved up from Reception it was a shock to the system. Gone were the days of sand and water play, choosing your preferred activities and free play. Instead, he was expected to take part in much more formal, desk based learning. He thrived, but I cannot see B doing so. A year ago it felt like we were in a race against time to get B school-ready. One year on, and if anything, the concern that he is not ready for the next big change in his life is even greater.

What I do know is that a label for the sake of a label is pointless. I think I’m in agreement with B’s paediatrician on this. Her attitude is that, unless such a label is actually going to make a difference, open doors or provide access to further services, then why bother? Getting the diagnosis of ASD did all these things and he is getting support as a result. Would a further diagnosis open further doors?

Or would it just be another label that defines the child at the expense of all other things? I still don’t know whether my son has autism or is autistic. I honestly do not know the extent to which autism makes him the person he is. What I do know is that there are so many other things that define him that are nothing to do with autism. His smile. His sense of humour. His intelligence. The love he gives and the love he creates.

Let’s label him that way, and to hell with the other labels.

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